Sand, Celebration and Surgery!

WE HAVE A SURGERY DATE!!!

NOW THAT WAS EASY!

To be honest, I never even considered ALL the twists, turns and abrupt stops this journey of just getting a surgery date for Tim.  We started this waaaayyyy back on January 11, 2013.  

We knew going into this Tim needed his Fontan procedure done soon, as he was approaching 6 this summer and getting older is not a good thing, when only half your heart has been repaired.  

In a nutshell, most kids in the US have this surgery before the age of 4.  The longer the heart adjusts to life/work load after 4, the more difficult it is to re-train the heart to function after the Fontan is completed.  So the chance for complications after this necessary surgery is much greater.  

So your now asking yourself...."gee, it seems like they should just leave the heart alone then?"  

Good point, however, the heart is working infinitely harder than a normal heart and will give up at some point, much sooner than necessary.  So in order to prolong Tim needing a new heart (transplant), and he will eventually, the Fontan is done to lessen the workload on his heart.  This will give Tim the stamina to be a somewhat normal 5 year old boy.  He runs out of oxygen running to the end of our driveway.  He desperately wants a bike for his 6th birthday soon, but really can't go down the street without a few stops for gasping for air. 

The second part of this discussion is about.....

WHY DID IT TAKE SO LONG???

That is a fair observation.  The short answer is this:

1.  Details and data needed to be gathered on our Arkansas Children's Hospital.  I am obsessive about trusting, when it comes to my kids.  I really do call and ask hard questions from all the sections that will be involved.  The data wasn't bad, but really wasn't favorable to Tim.  AR Children's had not performed the Fontan on ANY child older than the age of 4 and never on a child who was partially repaired in another country.  The element to mess this up was growing!

2. Tim needed a heart catheterization because the echo that was done, left the cardiologist somewhat puzzled as to what his anatomy truly looked like in his chest.  After the cath was done a second possible diagnosis was added.  Tim has a artificial pulmonary artery.  The cath wasn't able to determine if he ever had a pulmonary artery or if his was removed due to it's disfunction in China, many years ago?  So Truncus Arteriosis with a big

                                    ? 

was added to his congenital heart defect list.  He is very complex indeed.

3.  A second opinion was requested by us to one of the top pediatric heart centers.  We chose Children's Hospital of Philadelphia(CHOP).  They are neck and neck for the best hospital for this type of procedure.  This second opinion took longer than expected, but in the end they have a tremendous amount experience with international adopted complex congenital heart defect kids.  We feel much more at ease with this choice.

4.  Our insurance company.  They required detailed evidence sending Tim to CHOP vs AR Children's is the best plan for him.  This is actually being decided as I type this blog.  Prayers they allow this referral to press on.... and Tim be allowed to have the best of care at CHOP..

So our official Surgical date for open heart surgery is:

August 28, 2013 at CHOP.

Are you exhausted yet??? Yeah, its been a journey, like I said!

In other related fun, we took this family on vacation to a beach near Tampa, FL.  

Let's see....

4 days in the confines of our car.... oh yeah, were having FUN now!

7 days on the beach in FL....they kids LOVED the sand, salt and surf!

2 hotel stops....Kate isn't fond of her porta-crib:(

20 or so friends/family member's visiting....so glad to see everyone of you!

1000 hours of sun and fun

1 billion grains of sand, sea grass and shells Tim tried to avoid as he walked on the beach...yeah really!

Turns out the sensory buckets we put our orphans hands in, to grow those pathways in the brains and prevent all the sensitivity to any different texture.....well, I never considered sticking his feet in them??? 

He walked like it was a gravel pathway the 35 feet from the concrete to the ocean.  He worked his way to walking without looking like an 88 year old fire-walking man, but never was comfortable.  

Our 2 year old was absolutely correct in her assessment of herself, she IS a tropical baby indeed!

FIRST 4TH OF JULY!

The little's FIRST 4th of July was a hit!  They loved the fireworks, fun and being as loud as they want to be without being shushed(Tim mostly!!).  This is our last 4th, actively serving this great nation!  So it was doubly special in our hearts!  Retirement and all the stress and hoopla it brings is upon us as of October 1st, 2013.  24 years of the military has been a marathon of it's own!

VACAY, YEAH!

JEEPERS!!

EVEN I HAD TO GO BACK AND RE-READ!  It has been 2 months plus since my last blog post?!!

If I weren't living this roller coaster, I would have realized the crazy long time that has elapsed.  Soooooooooo, Without one moment longer, here we go!

FASTEN YOUR SEATBELTS! 

                         You might want the 5 point restraint kind.....this will be a bumpy bit of info!

This guy is probably driving beside one of you RIGHT NOW!

YUP, He's Legit my fellow drivers!

Although, don't be alarmed, he drives more cautious than a gramma because  he bought his gramma's car and is channeling her driving skills!  

The Big kids all excitedly bid so long to school and started summer vacation.  Although if you remember,  1 "little" is a backpack wearing school going youngin too!

HE 

STILL

ASK'S

DAILY

WHY THERE IS NO SCHOOL, TIM POUTING BECAUSE THERE IS NO SCHOOL, AGAIN, TODAY.

ABSOLUTELY!  His big sib's have a lot to teach him! I have tried to figure out how to capture that enthusiasm....like pixie dust or something....to sprinkle on the "less excited about school" bunch in this house!  Taking suggestions, really!

Grand Canyon Or Bust!

Bryce and the BIG kids went west for a week of fun touring Vegas Baby!, Grand Canyon, Hoover Dam, Sedona, Some big crater thingy (of course that's the official name...pfft!) and Glen Canyon Dam and Zion National Park.

I stayed home with the LITTLES and had an enormously exciting time washing windows, touch up painting, fixing the slide on the pool, cleaning every inch of the house to get it ready to sell. 

WHAT ON EARTH???

I am just realizing, I was had.... AGAIN!

SHORT STICK DRAWN AGAIN!!!!

The little kids and I, waiting for our BIG kids to return from their vacation.  We survived!

Now since I referenced selling our house in the last paragraph, better fill you in on our crazy roller coaster, we are on currently. 

 Bryce has about 23 years in the Air Force.  We left the Air Force about 13 years ago to fly for US Airways.  Then 911 occurred and we were furloughed.  Bad deal, but the Air Force desperately needed qualified pilots due to the Gulf War.  We were lucky to land right back were we started.  So long story....very briefly.... we were still an employee at US Airways during this entire time.  

Although we had a commitment to stay on active duty until 2015, because of an annual bonus and moving from IL to AR last summer, Bryce asked for release based on Timothy's health needs.  We would like to be closer to family, to help in the many surgeries and appointments upcoming for Tim.  The release was granted and we are retiring as of October 1.  

SOOOO, We are selling our house by owner, in case anyone here is just DYING to live in Cabot, AR!

I will update you on Timothy and the complicated web of :

WHO

WHEN

WHERE

I KNOWWWW I have said that, LIKE EVERY blog since Christmas.....BUT

I promise we are getting much closer to the answers.  He is complex, and the entire puzzle is being pieced together 

EVER

SO

SLOWLY!

Next blog coming soon.....Our first FAMILY  VACAY!....

YES!!!!

I actually got invited to this one.....geez, you embarrass the family once and never get invited back again!

A TEASE, since I want ya'll to come back soon, now ya hear!

Mamaw Hot Rod, Mother's Day and the Stuffing

SERIOUSLY!!

I have fallen off the cliff.....

Me not keeping up with details is...well.... a serious sign of 

SOMETHING

 and lets hope nothing to permanent??  I am falling back ON the blog wagon to serve ya some of the ...

STUFFING

Or just report on life in the super-sized HOV lane around here!

Oh, I crack myself up .... since my first topic is the perfect seg-way!

This is the Beau- leader of the kid pack

- in his new used Prius he bought from his Mamaw  HOT ROD!!!!!

If all of you remember his proclamation when he was 2 years old....he wants a green car with windows when he grows up.....Well, it has windows and with the proper lack of lighting, it could does have a green hint!!

Tilt your head right...ok... squint...yep there....now it looks more green----ish:-)

He is Over the Moon at the gas pump, as it doesn't empty his wallet!  I never thought I'd raise such a practical child??? ODD FEELING!

As the school year winds down, It always seems we get stuck in some sorta WARP speed ride.  The kids are just too busy these days.

Megan is sad to have soccer end for the season, but very excited to have no school soon!

Wes has soccer, band and general mischief to occupy him until further notice.... which the general mischief part may last until he is about 183 years old, or there about.  

My first Mother's Day as a super sized Mom..... wait a minute, let's re-write that a little more flattering.....as a Mom who live's in a shoe and has more children than she know's.... all righty, that's not it either...

AS A MOMMY TO 5 YOUNGIN'S

Well maybe there isn't a less comical way to put it? 

Yes, by the way, it still strike's a...What? huh? really? That many kids? Why? 

When I think to hard about it.  Since life stumbles on, day to day, with only a few minor hiccups and children being left behind....on accident mind you.... I only notice in the laundry category or the trying to squeeze 7 people in one hotel room category, that we are very large!

Mother's Day was spent in the usual way: Church, laundry, meals, a trip to a local park and chopping wood for a fire, to make smore's.  I'm certain I saw other Mom's in the hood chopping wood n there back yards too

...this is Arkansas after all!  

A pic o gram of the day's events...minus the laundry, so silly if you logged in for that pic....come by any day of the week for a "live" shot of that!

geocaching until...

the tick count over exceeded the acceptable amount!

Red Rover, Red Rover.....and no, that is not me escaping on the bike!

Tree climbing and a case of the "giggles?"

Puff the Magic Dragon Brother!

Fire is HOT!

Ummm, what is this for again?

My five little monkey's swinging in a tree... 

I will update all of you very soon regarding Tim's upcoming open heart surgery.  We are waiting for our second opinion to be given.  

Breaks, Bunnies and WHOA 5 months!???!!

Easter 2013

Where did the time go??

We are swiftly approaching our 5 month anniversary of being a family of 7!

OF COURSE we will celebrate as all families of 7 do,


One of us will get a heart catheterization.....

DUH!!!

Well more to the point....this guy needs a check under the hood

Picking up from where we left off in January after his echocardiogram....We still need to get a clear idea of where all anatomy of his heart is and how it is functioning.  He has grown a tiny bit and had his dental work done all things needed to clearing the path for the next step...

Well ANY step forward at this point is a great thing!  

April 9th Save the date!  Prayer's Please:)

Tim is scheduled for his heart cath. at Arkansas Children's Hospital.

SPRING BREAK

Our family decided to hit 2 different time zones for Spring Break.  Well in 2 different packs that is!

The "little's" and I flew stand-by to visit my family in Greenville,  NC.  

It's quite possible several things may have been overlooked....in no particular order of course:

1.  Someone's underwear.

2.  I am too old to fly with 2 small children by myself!

3.  Dude, what were you thinking?  Your too old to shlep two kids and stuff by yourself!!

 4. Did anyone mention, Cindy your advanced age might make it a challenge travelling alone with 2 small children?  

Ummm...... 

N

O

P

E?????

Ok, I may have over-shot the runway on my confidence in my abilities a bit! Ok, a lot then.   

It was so good to visit with family and friends!!  However, I am still scrubbing my memory bank on that whole getting there and back part.  Some pic's of the littles first ever egg hunt.

Kate needed an assit from Aunt Beth!

Tim walked around and around holding the basket, then realized what to do with it when he heard candy was in the eggs!

And some of the "Big's" Spring Break fun in Colorado!  Next year, I hope to pull the long straw!

Beau and board

Wes, busted for NOT having his chin strap clipped...grrrr!

My smiley girl Meg!

We all returned home to celebrate our Easter together.  Tim is still having a hard time grasping all the true and commercialized meanings of all our celebrated events.  As I explain, I'm completely awestruck at how ridiculous some of our traditions are!!!  It's amazing how much of our daily lives have been hijacked by merchandizing and the world at large.  I too want to wear this face...

  What on EARTH??? That's crazy talk Mom?!!?

This boy cracks us up with his ever exploding English phrases and funny gestures.  One "too funny" moment was this....My Mom is quite the gardener.  Her backyard is an oasis of typical back yard tranquility!  The squirrels are her nemesis!!! They help themselves to her bird feeders despite being "squirrel proofed?"...Ummm , yeah, that's not possible!

Now Tim is starting to get all his animals learned(in english)....but not quite there yet.  He has never seen pine trees or the cones they drop.  While eating breakfast he spied those bold squirrels eating and yelled  at the top of his lungs....OH HEY, CHICKEN...NO!  Then ran outside!

Upon his return he announced he had fed the "chicken's" now a "pancake".  Translated in English...He thinks the squirrels will be fooled into eating a pinecone....or whatever Mom called those prickly things!  

Some pics of our Easter, which is really the only reason why you clicked the link anyways....yeah, I may look blonde, but I'm not really ya know:)

Surprisingly NOT the egg dyeing disaster  I was predicting with two newbies!

OH WOW another "day"of gifts?!!  Love this "HOME" thingy!

I can't WAIT to shoot this on the roof today!!!

Wes LOVES a clever bunny!

See Mom... If I had those SKY HIGH heels you don't want me to wear, reaching things would be easy!

This is such a "faux" shot!! I really slept through all the hunting for these!

Too cute for any caption!

RED THREAD, ALL GONE!

Today I post about something related to, but not MY cuties!  This post is all about the reason I wore that red thread around my wrist for WAY, WAY, WAY too long.  Thank you Ashley Czzowitz for making it so long ago!  Definitely glad you can't smell this post.....the thread in question:

PLUG YOUR NOSE!!! SERIOUSLY, I CARE ABOUT YA!

After many summers, sweating my way through too many miles, it's LONG over due for being removed!!  It usually enters and exits a room lonnnngggggg before I actually get there. It has a pungent, rotten garbage truck, stentch errrrr, amazing floral arrangement scent!

So because of this cutie!!!!!!

Mycah Junbin Saylor

Mycah is my best friends newest son.  Isn't he Adorable!!! She is in China right now, bringing Mycah home, home, home!!! FOR EVA!   And YES, with her is the famous adoption whisperer....yup Sonia Martin!  She has three ubber handsome boys also HOME FOR EVA.  

So, it's time my "helpers" helped me remove this red thread from my wrist. 

Gas mask on...check

Scissor's at the ready....check

One, Two, Three Snip....check!

And the scissor fun continued until Tim and Kate announced they were done cutting!

And this was quite interesting when I cleaned it up.   YEAH......THAT I think is a definite "whisper" from the Heavens, don't you think????

They had cut SIX pieces, one for each former orphan I had prayed for and wore the Super Smelly Red Thread for all this time!!!

The forever family list is just beginning:  Representing each of the six pieces.......

Joey Martin

Jacob Martin

Joshua Martin

Timothy Brakman

Kate Brakman

Mycah Saylor

Are you next?  I would love to put ANOTHER red thread on for your cutie waiting, just WAITING to find their forever family!!!  Because I will talk adoption anytime and anywhere!  Just ASK!!!

More of Mycah, oh so cute, son of my best friend

AWEEEEEE!

Cutest Monkey EVER!

Learning all things Mickey Mouse!

Updates and Blurry Pics!

Hello all those few left reading the blog!  It's been a while since I've chatted with the few of you.  Thought I would update you all on the "littles",  progress and life in it's hum drum way.

We have been very upfront with our "littles" special needs, and have some news to report on our caboose and Tim's up coming appointments!

Let's start with our caboose and cutie pie!

Close your eyes and remember WAYYYY back to her referral post, or keep those eyes open and just search the index and re-read???  Kate's medical special need is/was? (both?)... ah hum, IS Thalassemia oh..... and she has an "outtie" (an umbilical hernia). 

Thalassemia is an anemia blood condition that can't be improved with diet, medicine or supplements.  Without sending you through a hematology lesson, briefly there are two types and three degrees.  Two of the three degrees will mean Kate will need a blood transfusion as often as every 23 days for life.  Kate's medical referral file indicated she had Alpha Thalassemia and the two hematologist both rendered their opinion as such: Because she has such a critically low hemoglobin (severe anemia) she is most likely in the major category(that's the one that needs monthly transfusions).  GULP!!  I had prayed for a little girl from God. He knows me best, so since I already have Tim and his broken heart, maybe the baby girl would be somewhat healthy or at least easier???  I trusted HE knew what he was doing and had a gut feeling things would be manageable once we finally have her home and evaluated by an American specialist!

An aside here.....I had a normal, human reaction to trusting at this level!  Everything said "this baby is gonna require a lot Cindy!"  I tried to trust-ed ....and in my gut, I had a feeling....whatever that means....things would be alright with her despite the overwhelming evidence to the contrary!

Fast forward to January 2013.  Kate was seen by the hematologist at the Arkansas Children's Hospital.  Many vials of blood and a return trip for more blood to be drawn, oh and TWO long months later (her analysis had to be done out of state, not much Asian Thalassemia in Arkansas) we are finally with a diagnosis!  Whew, that was a great patience lesson!

This cutie has Beta Thalassemia MINOR!!!  This is the most mild form, but most importantly although she will be anemic her entire life, she will never require a blood transfusion ever!!  Now her outtie, may or may not need a repair one day....but that's so doable!!

NEXT UP.....Tim and his heart troubles!

Tim saw the Cardiac surgeons also in January.  He had an initial echocardiogram that was CRAZY long for a 5 year old wiggly boy, but he somehow survived it!  The doc's were perplexed and somewhat speechless where all is heart anatomy is/was/mayneverhavebeen???  So the thoughts were

1.  Schedule a cardiac catheterization soon, to figure it out and find some missing parts!

2.  Before any cardiac cath can be done he needed to bulk up nutritionally.  Seems the orphan diet is NOT so good???  Odd, I know, right????

3.  Tim had two teeth that had HUGE hole's in them.  Rotten teeth mean bad bacteria near the heart, so that must be resolved before they can do any heart procedure.  

So off to the dentist and grocery store we went.  One pulled tooth, one filled tooth and 100,000 chicken nuggets later......We have his heart cath scheduled for April 9.  So, we now must wait for the answers, and a plan, for his next open heart surgery.  Which will help bring more oxygen to those outer extremities. A great visual aid, check out his hands in the "airplane flying through a rainstorm" pic below.

And NO it is not that he's a filthy 5 year old boy!

Life with a toddler....

So, what's it like to view life with a toddler in your arms?  Recently, Beau had an induction ceremony.  Kate, was being Kate, and talking whenever she felt like it.... and then shushing the speaker for being so rude!  B   Cuz    she's 2   and   oh   so   cute!!!  So mommy and Kate went to look at the back wall of the auditorium for a little while!  Our view of Beau getting his certificate is below.  It really sums up how I view most of life these days.  Busy, Busy, Busy baby girl!

Ok, in all fairness to the grandparents.... the shot Bryce got, from his cushioned seat, in complete silence, hearing not only every word spoken, but Beau's name being called.....I might be a little jealous, just a bit.....but one day my velcro baby will release from me and AHHHHH, I will take a deep breath!

And this past week I became older....actually ANCIENT! No, really the proof is below.  Thank you for the cake decorations Wes, only you could get away with getting so carried away with it!

I'm curious if that's my real age???

 in dog years? 

or dino years?  

Most mornings I do wake up feeling around 41,111,111....good golly maybe it's correct!??????